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A recent issue of Discover magazine contains an article called "The boy who stopped talking" by a pediatrician; Dr. Mark Cohen (p. 28, April 2006). In the article he describes a 17 month old child who had developed normally until about 15 months when he stopped talking and developed ways to communicate that involved taking his mothers hand and pulling on it to indicate what he wanted. In the midst of the article the Doctor states that he would not have diagnosed this child with autism in the past because "he's affectionate, he makes eye contact with me, he doesn't get upset if his routine is changed and he doesn't spin around and flap his arms"; all factors he had been taught to focus on when he was in medical school. In spite of this training he does give the child a diagnosis of autism based on his inability to carry out a developmental test on him which requires interactive play and socialization skills.
This article allows us a glimpse of how our understanding autism has evolved over time. It claims that we know " that autism compasses a spectrum of brain disorders that range from mild to severe" and that they have "impaired social interaction and delayed or disordered language development and use." Other than that, the door appears to be wide open as to what can or cannot be included in our understanding of this spectrum. As you may realize, from other information on this site, I question whether these statements are even true. A definitive description of autism is yet to come, and in all reality, may never come to light. Perhaps this spectrum is just a basket which we are using to label something we do not understand.
An important step in developing a clear understanding is to look at history of this syndrome in attempt to know where we have come from and perhaps to try to decipher where we are heading in the future. As I have taken this journey myself throughout the past 25 years, I have realized that it opened my eyes to humanity in a way nothing else has and changed my way of accepting what is perceived as truth by many. It has taught me how to question the claims of science, the claims of the medical system and the claims of the educational system. This article is a brief description of this journey.
Our knowledge about "autism" as a syndrome officially began in the early 1940's when two articles defining the syndrome were published on opposite sides of the world. This is not to say that there was no one who would have matched the criteria for autism before 1943, but only that we did not have term or diagnosis for it up until this time. There have been many studies in the recent years that have gone back and documented cases and treatment of the condition we now call "autism" before 1943. Autism did not suddenly appear in the early forties. However, it is likely that the number of cases in the human population at that time were increasing which may have led directly to the documentation at this time.
The first article was written by Dr. Leo Kanner, who worked out of John Hopkins Hospital in Maryland and published in the journal Child and Neglect. Dr. Kanner described 11 children he came across in his medical practice who were different from typical children, and yet similar to each other in unique ways. These children formed the basis for the definition of autism which continues today. However, much of the information in this article has been disregarded over time, as professionals chose to focus on specific areas of study over the years. The most important of these is intelligence. Dr. Kanner clearly stated that the children he was describing were not mentally retarded and often demonstrated high levels of intelligence. One fact that many people do not realize is that one of the children may well have been his own son, something I learned from a family friend who spent a lot of time in the Kanner household. This may have perpetrated his interest in this field, a common occurrence in the years to come.
Dr Kanner called the new syndrome "infantile autism". The "infantile" part of this title refers to the fact that the symptoms are recognizable by age three. Although most diagnosis in the past have taken place between the ages of three to six, changes are also occurring in this area. Tests have been develop to measure children by eighteen months. Many of the newly diagnosed children I meet these days are two. The child featured in the Discover magazine was only 17 months. Early identification makes a huge difference in our ability to provide early intervention services.
Many professionals also believe that infantile refers to the fact that the symptoms are there from birth on but we are discovering that more and more children are developing typically until a certain age at which they experience either a gradual or sudden regression. These children are being given a diagnosis of autism in spite of the fact that we have another disorder available in the DSM IV that refers to regression: the diagnosis of Childhood Degenerative Disease (CDD). The timing of these regressions are as individual as the children themselves, suggesting that the causes may vary. I believe that the regression and the variations in timing are indications that the definition of autism that we work with here at Autism Consulting Service is viable as they connect directly to the administration of vaccinations and the exposure to the specific viruses that the individual child is vulnerable to due to ancestral exposure to a particular virus..
"Autism" is based on the original definition of this word: the apparent need to go off into one's own world, or be lost in oneself. The choice of this word to describe this syndrome has led to one of the strongest myths of autism which is that these people choose to be alone and would rather spend their time in their own world than in ours. When ones listens to those on the spectrum one learns a different lesson. Yes, the need to escape into one's own world is a major factor in their lives but this is not where they prefer to be, but where they can feel safe. Most of them desperately want to be included in our world, just like everyone else but the sensory overload they experience and our attitudes and decisions make it almost impossible to achieve. In other words, we are responsible for placing the barriers in their way. If you want to read more about this, check out the book Autism and the Myth of the Person Alone by Dr. Doug Biklen, Dean of Education, Syracuse University.
Another important factor about Kanner's article to note is where he chose to have it published. At this point in history Child and Neglect appears to be an unusual name for a scientific journal, but it definitely reveals the type of thinking of the professional community of that era .The blame for most psychological problems during the 1940's was being place squarely on the failure of mothers to parent effectively. Although there are many who claim and/or believe that Dr. Bruno Bettelheim was responsible for the belief that cold parenting caused autism, this theory was in place right from the beginning and was held by most of the psychiatric and psychological professionals of the time. Dr. Bettelheim came into the picture later, accepted the theory and based his methods of intervention directly on it during the 1960's as did the majority of the professionals of the time. His greatest sin may be that he published a book on his efforts: The Empty Fortress, which became a best seller and which put the cold parenting theory of autism out into the open.
The second paper on autism, published in 1944 was written by a Dr. Hans Asperger from Germany. A translated copy of this paper in English can be found in Utah Frith's book Autism: Explaining the Enigma. Dr. Asperger's paper resembled that of Dr. Kanner in many ways but he chose to name the condition after himself: Asperger's Syndrome. Thus a situation occurred for a time in which the same syndrome had two different names: one in America and another in Europe: infantile autism and Asperger's syndrome. This continued on until the mid sixties when the World Health Organization of the United Nations determined that it should not go on any longer. Asperger's was dropped, most likely because Germany had lost the 2nd World War. Autism became known as "infantile autism" all over the world.
One of the more fascinating factors in Asperger's original study for me is the source of his subjects for his study. They were referred to him due to their refusal to take part in Hitler's Youth Corps. This was considered a definite "no no" in the German society of the time. In retrospect, it is likely a decision that many others wished they had made and that most of us can look up to. I believe that this is one of the most important factors we can learn from this original research if we choose to pay attention to it. As I get to know more and more people on the autism spectrum I realize that generally their level of morality is clear cut, well defined and at a much higher level than that of most "typical" people. Of course one can always find exceptions to the rule.
The "cold parenting" view of autism led to treatments that focused on fixing the mother through psycodynamic psychotherapy based on the work of Sigmund Freud or removing the child from the home in order to "protect" them from their parents. As you can imagine, neither of these methods were very effective, especially since the parenting practices of these parents were not the problem and had very little to do with autism at all. Sadly this misconception still lingers in the background and many parents are still having to fight for themselves and deal with professionals who doubt their parenting practices.
Reviewing research on autism carried out through the 1950's and 1960's brings you face to face with the reality of scientific research. In spite of the fact that parenting has little to do with autism, you will find one study after another "proving" that there is a connection if you make the effort to read through old scientific journals. The preponderance of "cold parenting" articles chosen for publication during the 1950's and 1960's is currently matched by today's focus: an impairment in the brain. This should alert us to the fact that it is not actual science that is determining the research that is undertaken and subsequently published, but the prevailing theory or belief of the current society. Very few people have the guts to stand up and change the beliefs of the world. If they try to, there is a huge outcry before people settle down and accept the truth. It happened to Galileo. It happened to Pasteur. It continues to happen to the scientists today who question what is taught. A lot of people are totally unaware that publication depends upon "peer review" which only means that "like thinking" people read your articles to determine whether they will be published or not. Although the concept of "peer review" may suggest we have a safety net in place, the only thing it is really protecting is the status quo and lets us hang on to our current beliefs and theories.
The cold parenting articles of the 1950's and 1960's can provide us with the tools to determine how studies are developed, how the data is used to support the beliefs of the people doing the research and most importantly how one can measure whether it is valid or not. Since absolutely none of these articles are valid we can use them as practice tools to figure out for ourselves where the mistakes are being made so that we do not continue to make them in the present and the future. We can also use them as a comparison for any current research we may be interested in validating. Once you get into the habit of questioning the whole procedure it is not difficult to recognize that very little of what is claimed to be valid scientific research in this field actually meets the rigorous standards set by true scientists. Sadly, most scientific research is based on finding proof for one's beliefs, not on discovering the truth. As soon as you read the claims of researchers which focus on one or more of the "symptoms" of autism, you know that you need not read any further. We can "find" whatever we want to find. Is it meaningful? Not necessarily.
Although the theory of cold parenting and the treatments based on it continued to affect the lives of the children with autism during the 1960's, a number of changes were on the way. Three major factors came into play during the 1960's. These were the involvement of parents in the field of autism, the focus on behavior modification and the use of psychiatric medications.
Parent involvement in the field of autism was a direct result of the cold parenting theory. Although there were those who accepted it without question and followed the advice of the professionals at the time, it didn't make sense to other parents, especially those who had more than one child and could not understand why only one would have autism as they treated them all alike. Parents began to reach out to each other for support and in time formed organizations to unite them in their search for answers for their children. The National Autistic Society originated from the foundation of the Autistic Children's Aid Society of North London on 23 January 1962 by parents of autistic children living in the area, with the assistance of a member from The Spastics Society. The current name was adopted in 1975 when the charity extended its interest to the whole of the United Kingdom. The Autism Society of America was also started by parents under the leaderships of Dr. Bernard Rimland and Dr. Ruth Sullivan in 1965. Both of these societies continue their work today bringing awareness and improving the lives of those on the spectrum. In time Autism Societies had been organized in every country in the world. Be aware that the focus of these organizations is a parental view, not one of those one the spectrum.
Professionals in the field began to use the theories of B.F. Skinner to modify the behaviour of those on the spectrum during the mid 1960's. Dr. Ivar Lovaas of UCLA originally began this technique using aversives such as striking, shouting, or using electrical shocks. Go to the Autcast.com to read more about this and see and actual video of a therapy session of the time. In time Lovaas moved on from using aversives to what he claimed were positive behavioural supports because he had found that (in his words) "you had to keep increasing the level of the aversive to keep it effective over time". Aversive behaviour therapy based on the work of Lovaas continues to be used in some settings today. An example is the Judge Rottenburg Centre in Massachutes where electric cattle prods and other forms of torture are used to control the behavior of their students. In the meantime anyone who experienced this therapy in the past currently deals with PTSD on a daily basis.
Psychopharmacology also became an integral part of autism tretament during the 1950's and '60's. The discovery of chlorpromazine's effectiveness in treating schizophrenia in 1952 revolutionized treatment of the disease, as did lithium carbonate's ability to stabilize mood highs and lows in bipolar disorder in 1948. Professionals with no clear understanding of autism jumped on the pharmacology bandwagon, administering all sorts of different psychiatric drugs to those on the autism spectrum with the hope of alleviating the symptoms of autism. You must be aware that in the midst of these treatments, there never was and still is not a SINGLE medication that made it through the strict validation process required to make the claim that this medication works for autism. This situation continues right up until today, in spite of the tendency of medical doctors to administer medications to this population of people. There is not one single drug that works for autism. Claims are made that the medications work on specific symptoms such as anxiety, aggression or compulsive behaviors. This may be true but the reality is that all these medications do far more harm than good. "We will never address health or disease through a drug, vaccine or the consumption or injection of anything unnatural or foreign in an attempt to reproduce innate immunity. This opposes the natural biological interactions of an organism which only lead to one thing...more disease." ~ Dr. Dave Mihalovic
In 1967, Dr. Bernard Rimland created the Institute for Child Behaviour Research in San Diego (now called the Autism Research Institute). He had written and published a book in 1964 on the biological basis of autism Infantile Autism: the syndrome and its implications for a neural theory of behavior which was largely ignored by the general public who still held on to the theory of cold parenting. Rimland devoted every spare moment of his life amassing a vast database of research and case histories, and developed close connections with the parents of autistic children throughout the world. Rimland's views on the biological causes - and biomedical treatments - of autism did not come in wide spread appeal until the 1990's with the development of the Defeat Autism Now (DAN). He always acknowledged the likelihood of a genetic component in autism spectrum disorders. In a 1987 newsletter he published the recommended treatments for autism: education, mega-vitamin therapy, focusing on Vitamin B6 and magnesium, avoidance of junk foods containing sugar, phosphates, and food additives, and allergy treatment. He warned parents to avoid psychotherapy and drugs as there was very little evidence available of positive outcomes from either.
Note : this history will be continued when we have the time...........